Stakeholders in Cancer Surveillance: Addressing Gaps in Data Sources

PURPOSE Having accurate cancer incidence estimations is essential in informing decision making, driving policy and supporting intervention and evaluation programs. In South Africa (SA), cancer is a reportable medical condition that every healthcare worker is obliged to report to the National Cancer Registry (NCR) as per Regulation No 380 of the National Health Act (Act 61 of 2003). Regulation 380 also mandates the NCR to establish population-based cancer registries (PBCRs) across SA. This reports aims to describe the cancer surveillance status in SA and identify gaps in cancer surveillance. METHODS The NCR conducts pathology-based cancer registration at national level and PBCRs at sentinel sites. The national pathology registry uses passive surveillance methods and miss cases that are diagnosed elsewhere. In order for SA to be able to produce accurate cancer incidence data, there needs to be four population-based cancer registries (PBCRs). The pioneering PBCR was established in 2017 from Ekurhuleni district. In PBCRs, all cancer data sources are explored, such as medical files, pathology reports, pharmacy prescription, cancer screening, hospital admission, hospice, private practitioner's consultation, radiology, discharge, mortuary and outpatient registers. International Classification of Diseases for Oncology-3 guidelines are used for coding the site and morphology of each case. An annual cancer incidence report is released within a 2-3-year lag period. RESULTS There is currently no existing accurate incidence estimation for cancers in SA. The pathology registry, due to its nature is incomplete and in addition not all pathology groups comply to reporting. In PBCRs, a significant number of data sources are inaccessible due to non-compliance and fear of sharing confidential patient medical records. PBCRs are costly to run and there is no funding permanently allocated to it and its operations rely on grant funding. Stakeholders are not well-informed of their roles in cancer surveillance. CONCLUSION All healthcare providers need to adhere to Regulation 380 and report cancers to NCR.